New Year... New Me?

I think everyone at some point in their life has said the "New Year, New Me." I know I have. My resolutions are always the stereotypical: to lose weight, get healthier, eat better, drink more water and less diet coke.. it doesn't always happen but this year will be different than previous years and that's 100% certain.

2021 was overall a shittastic year for our family. It began so hopeful after a long 2020. January we were in the middle of our medical search to explain why Greyson was regressing so much and losing weight. We spent NYE in the hospital that past 2 years. 2019 I was in surgery to remove part of my placenta that stayed after Grey was born and 2020 we were at Children's hospital in Milwaukee getting and EEG and MRI done on our one year old. Not exactly the way we want to spend NYE. February 2021 was quieter. At that point we knew he had the brain abnormality- he is missing the septum pellucidum, but that is a secondary finding, it's not a primary. March we were admitted to Children's in Madison for Greysons rapid weight loss and this is when we met with every specialty including genetics. The geneticist was the first doctor to sit us down and prepare us for the magnitude of what we could be facing. We think he knew what it was then but couldn't tell us until it was verified. The end of March... March 26, 2021 we got our diagnosis. April was the NTSAD family conference and that is where we met the amazing families who have truly helped us survive the the rest of the year. Since April, Greyson has regressed to not eating by mouth any longer, his smiles and laughs are rare, and we just enrolled in Hospice.

This year sucked. We had a rough 2020 but man, 2021 really tested us.

But along with the suckage if this year, we also made some amazing friends, found out how amazing humans can be with how much support and love we have received, and how many people love our son. We upgraded Grey's nursery to a big boy room, I found the love of crafting, I had my girlfriends come visit me, we had family photos, my parents and sister/niece moved to Green Bay, we had more visits from Adam's Dad and his fiancé. Our son has regressed quite a bit but we still have him. We still have the little glimpses of smiles and giggles here and there. He still looks for Adam and I when we enter a room, he still recognizes us, and he still is comforted by us. We can still read him books and snuggle, we read lots of books and do stretches. He still loves lights and still enjoys music. I think my biggest resolution this year is to try and focus on the moment. Stay present. Take more pictures and videos. Let yourself have the emotions and feel grief and sadness but then take the reminder that we still have Grey. We have so much support surrounding us. Give myself more grace. Give Adam more grace. Keep supporting each other. Keep in touch with family and friends and allow them to help when they offer. I also of course want to get healthier too :) but I think this year is going to be focused more on my son, my husband, and myself. We are a family and we are all in this together.

We have a hospice team in place now and even though the thought of my son being in hospice.. our team is truly incredible. We have our own RN, CNA, Social worker, and Chaplin. We have grief counselors if and when we need. Our team truly loves Greyson.. you can tell when they come over how much they love him and care for him. They care for Adam and I. We've met with them twice now.. and it's truly present in how they react to him and talk with us. So yes, hospice is scary and I've shed a few tears thinking of my son being in hospice over the past two weeks, but that scary word comes with such an amazing team who is here to help us and help our son. The more hands on deck, the better. Plus, they know our story. They know Greyson's diagnosis so that we don't need to explain what it is, or what he can or can't do every single time we meet with them. It's the same team every time so they already know. They know he eats by gtube. They know he can't hold his head up on his own anymore and that he can't stand, walk, or talk. They know. I don't have to try to fight through tears trying to explain it every time. That's a huge weight lifted off my shoulders- and Adam's too.

Our New Years was wonderful and spent with family. Adam's Dad and his fiancé Jill came down to Green Bay to spend the weekend with us. They definitely fought over snuggles but Grandma Jill usually won :)

Grandma Jill is also a hair stylist back home and she came ready to help tame the curls. Here is some pictures of the mop before, during cutting, and after! Dada and I both have curly hair and Grey gets some beautiful (but messy!) curls after bath time. I typically blow dry his hair after to make sure his hair is dry. He doesn't like when you towel dry so I just use my dryer. Grandma cut lots of hair off Grey and then cut Adam's hair too!

Grey's sweatshirt below is the high school Adam and I both went to but it has Adam's old football number on the back. Grandpa Steve and Grandma Jill got that for Greyson for Christmas. It's such a comfy cozy sweatshirt and it's SO cute on him. We went to Nana and Papa's house on Sunday to spend time with them, my sister, my niece and her puppy. Grey loved the snuggles and took a nap with Nana.

Now that Grandpa Steve had a chance to open his Christmas gift- I can post it. Adam's sister has a storage unit here in Green Bay and kept a lot of her cards from her family over the years. Steve's Mom passed in 2017 and we found a card with her writing on it. I figured out how to take it off the card to send to my cutter and I made him this frame with her writing on it. It was a special project and it was so fun to work on. They always joke that Grandma Pat (Steve's Mom) lets you know she is around by flickering the lights. I was in the basement working on this and the lights flickered a few times. I kept saying Hi Grandma Pat! Then Grey got a stormy kromer- my little Yooper! He's so handsome!

This was a cute video from the other day when we went to PT - before his hair cut :) He was so alert watching out the window as we headed to see Ms. Liz!

Here is an old video for you- from when Grey was younger. I could listen to those giggles all day!

ok- one more :)

If you get a chance, I also uploaded some more pictures and videos under the "Look at this cute kid" pages.

So, even though this year is full of so many unknowns, cheers to 2022 and making this year special.

xoxo,

Kim